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Visit to National Jewish Health in Denver, CO
MAC & Bronchiectasis | Last Active: Apr 29 7:16am | Replies (152)Comment receiving replies
@rozie83
I can understand your physicians being reluctant to order the IVIG if you haven't been sick.
I'm wondering if there is something else that they're considering? I was VERY sick for 5 years while they were trying to find out the cause. Finally, after a new-fangled CT I was diagnosed with BE. My right middle lobe was so damaged and infected they removed it several weeks later. That was 1996! I have BE throughout my lungs so further surgery will not be an option as it's on both sides. Fortunately, the infections are being kept to a minimum with the help of the infusions. I have them every 28 days, administered by an infusion nurse in my home over a 5 hour time period. Before I turned 65 I was going to an infusion center, but Medicare only pays for in home treatment. Go figure!
All the best to you and your care team.
Karen
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@kpger Thank you, Karen. Good to know they have to do the infusion in your home. I have a call into my doctor and also have appointment with my primary care doctor. Earlier tonight I got a call from my pulmonologist's nurse at NJH. I asked her to double check about the infusion. His notes are very clear that since I haven't had any infectious disease I should not have the infusion now. In the future (hopefully not) the could change. I'm in Arizona where very few people wear masks, so I often do not think about it. It's supposed to get a lot cooler this weekend, but up to now I've been able to be outside a lot. I was going to have Thanksgiving at my house, but my daughter in law offered to do it, and I was very glad to let her. I'm too old to do holidays any more. I have 10 grandchildren and two greats. If anyone is sick, I won't go. They are all supposed to know that. I don't know if I know where you live. I moved here from Chicago and am so glad I am not in a cold weather place any more.
Stay well. Roz